I've started having burning hands and feet, which keeps me awake at night and is quite painful.
Looking into this, I have found that erythromelalgia (EM) only affects 1/100,000 people, but also that lymies can be prone to this. It's a neurological condition "for which there is no cure."
Is anyone in our group experiencing this? It's horrible to have another form of torture to add to our list of symptoms...
Posted by steve1906 (Member # 16206) on :
Mars, Maybe these two sites might give you some insight.
- Sorry to hear of this. You say: ". . . It's a neurological condition "for which there is no cure." . . . (end quote)
That is not true. The source of that statement is wrong.
You have every reason to have hope this can get better, depending upon the causes in your particular case.
Strongly, I have to disagree with anyone who says there is no cure for (just about) any rough and tough condition - no matter what they might have named it.
Don't let that disease / condition name stop you in your tracks. Please.
Have you had basic assessments of blood glucose? Still, typical tests often miss this. More detail below.
Diabetes can be one cause of Erythromelalgia and, really, the first thing to focus on.
Even if you are not diabetic or pre-diabetic (though many are undiagnosed) if you run blood sugars very much over 100 after a meal, that needs a closer look for any sign of insulin resistance.
This has gotten rather long - you might consider this as a REFERENCE LIST - print out or to copy to your personal health files to find along the way.
There can be various causes for this. So, there most certainly can be things that not just help with comfort but also might help the symptoms disappear.
Of course, in addition to any connection to lyme or other tick borne or chronic stealth infections (especially bartonella) . . . [Be sure to ask a good LLMD about this] . . .
Three things that are high on my radar since I've had degrees of success against burning pain issues -
1. If you have a LLMD, discuss with them. No matter what other kind of name a symptom / condition might have been given, what you describe is a frequent issue for those with lyme / TBD, etc.
The Autonomic & other nervous systems are nearly always affected by lyme / other TBD, etc. However, when those infections have been adequately addressed . . . may find the various nervous system dysfunction improves a lot.
As for healing of nerves beyond that, that can be trickier (Lion's Mane mushroom can help with other stuff is out of the way),
& of course, as the resultant inflammation recede by various therapies mentioned here - you might see improvement.
The fastest improvement might be seen with blood glucose issues if you have any (most people do, and infections can make it worse, so can liver stress as most with lyme have).
* Oh, by the way, be sure to avoid getting overheated. *
That can really mess with the autonomic nervous system that is so messed with with lyme. Gentle warm ups to cozy are good, though.
Avoid hot baths, saunas, etc. (Unless Low Heat Infrared Sauna - and then be sure to keep it to the low heat range).
especially avoid epsom salts bath water on your skin - it's very caustic to areas of skin that so affected.
Do take a good magnesium supplement, though. Magnesium Citrate good to help lessen oxalates, too.
A wide-eyed approach to all things that might contribute is important.
2. ANDROGRAPHIS as suggested in Stephen Buhner books. Really helped painful burning feet for me. It took months, though, likely because I could not afford the full approach but do read not just his first book but others, too.
Some lyme support groups might loan them out - yet they are very reasonably priced.
3. but this should be first, actually.
BLOOD GLUCOSE / INSULIN RESISTANCE
If you do not have a blood glucose test kit - get one. I say this as a directive because it is that important.
For starters, ask a friend / family member if they have one that you might use while they come over for a visit.
Time it for them to be there for a baseline test - after not eating for at least three or four hours or so, preferably.
Then eat a typical meal. No snacking or soft drinks, even sugar free after this. water, tea, okay.
Test: 30-min. after finishing your meal, and at 60-min., 90-minutes and 2 hours after the meal.
If your friend / relative can stick around longer and has one more testing strip to spare, say another hour or two (or more), test again before they leave to be sure your glucose comes back down to pre-meal..
Record your numbers and save to compare later if you can obtain a kit for yourself. That would be great to test out various foods for a week or two.
My burning fingertips improved within days of being sure my glucose levels never get over about 100 in my after meal testing [other than during the initial food test where I saw what squash did to me and banished it, sign.] - I've managed to get my basic levels in between meals to about 83.
The snapshot tests down in the doctor's office cannot tell you all you need to know. Even the HB A1c can't if you have highs AND lows as they average.
What might be of help would be a 5-hour KRAFT INSULIN test but doctors do not do that. A short glucose tolerance test is usually not done correctly, either and won't tell you much about the overall picture.
See: Ivor Cummuns YouTube video for Insulin presentations that are fabulously instructive.
It's important to see what happens when you eat food (and then figure out which foods for you do not cause a spike in BG.
I've been on a ketogenic (very low carbohydrate diet) since June 2018. Now, I'm not suggesting that for you although if, after testing your glucose several times a day for a week . . . if you have highs . . . you might check into a low carb / high fat approach and see if this can change.
You could have insulin resistance / pre-diabetes or even T2 diabetes. A good source for intro and how to find the kind of doctor who can help reverse - yes, reverse this - would be to start at the VIRTA HEALTH website / Dr. Sarah Hallberg & Stephen Finney's research links are there.
High glucose and the resultant insulin spikes after certain foods can also mess with the all nerve fibers - and the autonomic nervous system so even if lyme / TBD are a main problem addressing the way your body handles / does not handle glucose / insulin might help in so many others ways.
Just one of many references to possible glucose / insulin connection:
Erythromelalgia associated with acute diabetic neuropathy: an unusual condition. ... Erythromelalgia is a syndrome characterized by erythema, burning pain and increased skin temperature of the affected extremities.
4. OXALATE build up in body? This affects more than just kidney stones, and those with "leaky gut" are much more prone.
Avoid: spinach, almonds (and anything made with almonds - or many other nuts) . . . rhubarb, beet tops and root . . . .
Avoid smoothies overall as that can also be high oxalate but also to the moon with blood sugar spikes from the high concentration of natural sugars in a super refined form (liquid).
From what I've been able to find in extensive search, if you want some kind of easy nutrient green drink, spirulina &/or chlorella seem good on all aspects that I touch on here. Good source: Mountain Rose Herbs. =
Won't raise blood glucose, helps the liver to move the trash out, good nutrients (but not a meal replacement) and seemingly low oxalate by the few things I've been able to shake loose from the web searches all week.
Several of the presentations I've seen in the past few weeks on this mentioned the burning hands and feet, not just "inside sensations" but also in the skin, even to blisters and rashes.
A low oxalate diet and work on "leaky gut" reversed this for those who talked about it.
I have links sets if you want a jump start to finding out more. Just tell me if you want those.
5. CHEMICALS / mold in your home, car, etc? Consider all this.
Chemicals in your food - or even additives in your Rx?
MSG, even some "natural" foods like seaweed should be avoid as that's very high in a natural MSG and can mess with the autonomic nervous system as well as it's a neuro-exicito-toxin over a tiny amount.
New textiles - esp. with FLAME RETARDANTS
A foam mattress can be a mine-field of chemicals. Same with some pillows.
personal care, laundry soaps, etc. Scented products are endocrine disruptors and can create brain / nervous system reactions
If you have gas heat / water heater, etc. Call the non-emergency number for your local fire station and ask them about getting your home air tested.
Also ask them or DMV how to check the inside of your car for possible exhaust issues. Do not travel too close to any vehicle, especially diesel fueled ones.
5. Physical stuff: good insoles / support for your shoes (though I have an issue with some of the chemicals that might be infused in some of those penetrating the feet).
Ergonomics: posture, how you use your hands / feet as to pressure put on nerves, etc. Avoid lifting weights - those other kinds of gentle exercises good.
Look up: Qi Gong, Tai Chi . . . Feldenkrais
These are just some off the top of my head things that really mattered to me. I know this can be overwhelming, yet there is not one thing here that does not matter. And there's a good chance that your hands and feet could be happy again, really. -
[ 01-26-2019, 12:18 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
Another REFERENCE page.
Again, please do not assume all is well if you've passed a one-time test from your last GP visit. A one-time look is not adequate.
The best place to begin with Glucose / Insulin information. And, if you can stream YouTube to your TV, you can sit back in comfort as you take notes.
For more on this topic of the Dietary Guidelines - and even most advice at the Diabetes and Heart Assoc. organizations (they are mostly funded by junk food industry & pharmaceutical industry),
you might search out writings / books / presentations of
Gary Taubes & Nina Teicholz, both investigative science writers. they co-founded:
. . . The Guidelines do not give us the right advice about how best to eat to prevent obesity, type 2 diabetes, heart disease, or Alzheimers.
These Guidelines must be reformed so that they are based on the best and most rigorous science. Only then will they be able to help Americans fight nutrition-related diseases. . . .
----------------------
[my voice here] Most doctors are not aware of the advances in the past few years (or work done even a hundred years ago with the "Banting" diet that helped prevent some diabetes' complications even then).
This is the kind of doctor who is at the leading edge to help prevent, manage or even help reverse or put into remission various kinds of neurotogical damage:
Dr. Eric Westman (with Duke University Medical Center)
Diabetes and Pre-Diabetes
The HEALcare® clinically tested low-carbohydrate ketogenic program uses “food as medicine” to put type 2 diabetes and pre-diabetes in remission without medication or insulin. . . .
Hear how he arrived at 83 at what he thinks optimal blood glucose. Note, too, that he's had type 1 Diabetes since his youth. He's saved his own life by his study and enjoys helping others.
Session 1. Introduction.- Dr. Bernstein's Diabetes University
. . . discusses his own experience as a Type One Diabetic, how he developed the personal testing of blood sugars . . . how his methods of normalizing blood sugars can reverse complications and depression.
[Note: he's in his workout T-shirt, such fun but you may need to take the screen lower if your eyes spasm. You should see his intense, but short, muscle workout moves. He's amazing!]
Session 2: The Problem With The ADA Diet. - Dr. Bernstein
10:45 . . . discusses the high carbohydrate diet advocated by the American Diabetes Association (ADA) and how it leads to high blood sugars and complications.
[my note: not from this video - but do not be fooled by "low glycemic index" foods as most of them are actually sky high in carbohydrate and do not at all keep blood sugars from surging for quite a while in terms of hazard to glucose / insulin highs.
I was fooled - and harmed - by this notion of "low glycemic index" foods being safe. I figured foods recommended by the ADA must have been "okay" but many are not at all ] -
[ 01-25-2019, 07:05 PM: Message edited by: Keebler ]
Posted by Robin123 (Member # 9197) on :
Keebler, we need to make you an honorary doctor!
Posted by Told you I was sick (Member # 35068) on :
Mars Bars-
You’ve come to the right place. I have Erythromelalgia. Let’s talk. Send me a PM if you want to discuss more details, k?
Take good care, all... Told You
Posted by Keebler (Member # 12673) on :
- Robin,
Thanks. Yet, Really, all here deserve top honors in being persistent in their learning and sharing. -
Posted by Ron Dean (Member # 51807) on :
Yes I have burning hands and feet. Hands are mild still but feet become intolerable and effects my sleep. Which in turn how I function. Drives me crazy it is so bad at times.
Posted by kidsgotlyme (Member # 23691) on :
I woke up a few nights ago thinking that I had somehow burned the pads of my fingers on one hand. It was THAT painful. I ended up having bad pain all day long on both hands.
Before this, I was having intermittent pin prick feelings in my hands and feet.
This new pain was so bad that I contacted my doctor to ask if a change in meds had caused it. She said that my changing to Cefdinir gets deep into the neuro issues and not to worry.
Then I called my daughter and asked if she had ever had this kind of pain. She stated that she used to have horrible burning pain in her legs during treatment. I have a new appreciation for all that she went through now.
She told me just to do some detox and take an epsom salt bath and I did feel better. The pain just comes and goes now thankfully.
Oh yes now I remember this also;LLNP said it's actually a herx reaction. The day after I had the horrible pain, I went shopping and was super emotional and drained from just being around people. I felt like the whole world hated me and was against me. It was the most surreal feeling. I feel like this was just another symptom of neuro herxing.